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The Debenham Project

It must be pretty obvious now that I love stories – telling them, writing them, reading them and most of all, discovering them. The other day as I was researching something else (my ability to wander off course is legendary in my family), I stumbled across a corker.

It begins eight years ago in Suffolk, where “local” is considered anywhere within a four mile radius, this distance being rather brilliantly defined as “halfway between here and somewhere else”. It was February 2009 and a handful of church elders in the village of Debenham decided that they – the “four mile” community, the 6,500 residents, the locals – should try to support those of their families affected by dementia.

It ends with a truly dementia-friendly place in the very best sense of the phrase. In the words of Lynden Jackson, a man pivotal to the story, with a “dementia pro-active community”. So, how did it happen and what can we learn from this heart-warming tale?

The aims of what is now known as the Debenham Project weren’t high-flown or complicated; they were simple and clear. Of the roughly 200 frail, elderly people in the area, 42 per cent were thought to have significant dementia symptoms and 110 people previously living in Debenham had moved into residential or nursing care more than four miles away. This meant, so the thinking went, that 110 elderly individuals had had to leave their partners, relatives, friends, neighbours because they couldn’t be cared for in their own community.

But why should they? The church elders, mulling over the issue, asked themselves why these people with dementia couldn’t be cared for where they live, in familiar surroundings amongst those they know. To this end – and without having any real notion of where it might lead – they organised a public meeting. It being England, and Suffolk, and April, the night turned out to be miserable and rainy. No more than a handful of folk were expected to turn up.

More than 70 people came; it was standing room only. And that evening, the philosophy, foundations and guiding principles of the Debenham Project were hammered out. I believe that these beliefs represent the way forward not just for this Suffolk village but for all of us – because they represent the very best model of community-focussed dementia care.

First and foremost, it was decided that the Debenham Project should be just that: a small, local, community scheme, operating at the grassroots, benefitting, owned (this is important) and implemented by people motivated to offer their help to those they know.

Other principles included the avoidance of bureaucracy; concentrating on what could be done (within four miles), not stressing about what couldn’t; focusing on the family carer because a) it is usually him or her who takes the brunt and b) by supporting the carer you support the cared-for, and vice-versa. My sentiments entirely.

In October 2009, the Debenham project was formally launched to an audience of more than 150, with the collaboration and support of, among others, the mental health trust, adult care services, three major charities, the library, the church, the post office. In the six months since the damp April meeting, an advice and information centre had been created, a friendship group for the elderly had been adapted to form an activities and social hub, the first Food ‘n’ Friends lunch club held, a website created and a confidential telephone helpline set up. As Lynden (the project’s chairman) says, it was all pretty rudimentary and fragile – but it was there. It existed. It worked. It helped.

As the years have passed the project has evolved and matured, with the addition of activities such as the Carers Club and Info Café, the Fit Club and Debenham-on-Call (an informal network of trained volunteer carers ready to step in at short notice), an up-to-date register of local professional care and domestic help, a community transport network, a small relaxation therapy group, a Way Back When reminiscence group and (by working closely with Norfolk and Suffolk NHS Foundation Trust) specialist memory and support services with trained volunteers accompanying individuals and their carers to appointments.

Some offerings, such as the confidential telephone line and the local diagnostic clinic have been superseded by statutory agencies. The project doesn’t believe in continuing to deliver services that can be better provided by others. While some aspects – such as the academic, educational and training experience of professionals critical to the care of an ageing population – are simply beyond its scope.

The secret of the Debenham Project’s success is that instead of the traditional structure of a top-down hierarchy in which volunteers support professionals working to a generally rigid framework, the community “owns” its project, only calling in expert help if and when necessary. The whole thing evolves and works from the bottom up, not the top down.

As Lynden says, “We believe that this is the only way that truly person-centred care can be delivered – caring for the community, in the community, by the community”. He could have taken the words right out of my mouth.

Because it is so rooted in the community, because people – neighbours, friends, families – are constantly talking to each other, the project and its trustees (who are all also volunteers involved in the week-to-week running of the activities and services) have deep personal insights into what is wanted.

For example, newly diagnosed individuals and close relatives want information about how the condition will progress. But, as Lynden says, “Really, when it comes to it, they want reassurance that they are not alone, that there are so many who have followed their journey and who will try to be there for them”. A message I frequently hear.

The project is entirely volunteer-based and now has over 100 volunteers, including more than 50 regulars devoting an average of half a day per fortnight – the cost is therefore small: an average of £8,500 or £85 per annum per family living with dementia (a little more than £1 per head of the population in the four mile area).

In 2015 in Suffolk there were an estimated 11,000 people with dementia, which means in total about 20,000 people (the families of those with the condition) are affected. Yet at that time the sort of post-diagnostic support offered by the Debenhams Project was limited to about 1,100 two-hour sessions for a carer or their loved one per month (less than half a day a year throughout the county). So, as Lynden says, “We urgently need to double, triple, quadruple, the capacity of community-based activities, services and support – and then do it again!”

Since 2015 the need for community-focussed dementia care has increased, not just in Suffolk but up and down the UK. As Lynden told me, “Fine words butter no parsnips”. The time has come to convert into action the tremendous goodwill that has been highlighted by national schemes such as the Dementia Friends initiative.

The Dementia Project does this in spades. It shows what can be achieved when a community decides to just get on and do it – and makes a real difference.